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StayAtHomeMom

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  1. I assume your fitbit is like my Garmin and only checks every 2 minutes unless actively checking or broadcasting. BTW I would recommend the Garmin it is waterproof . That being said if your ranges are correct then yes it is possible to have POTS with such a "low HR" it is not the numbers but the jump of 30 or more, sustained, with symptoms while standing. I used to do the poor man's tilt table with a blood pressure cuff in the beginning before my diagnosis. I now use my Garmin to check on myself. For instance I was sweeping my back patio and all of a sudden felt really ill. Because I know my normal ranges I was able to check and see my HR was abnormally high and went and laid down before my body rebelled at me for days. Sometimes I feel sick and it turns out my Garmin says I am in range so I push through it. 110/70 could be low. Depends on what is normal for you. That is what mine looks like if I take my beta blocker and not my midodrine. I have had doctors and nurses say it looks good and others say it is low. I used to run a perfect 120/80 before my POTS reared its head. I know low would be 90/60. But I don't think 10 points below average would be low.
  2. It can also be a sign of an adrenal disorder. Personally I have had it happen but not all the time. Every so often I will scratch my arm or leg and the areas around it will turn red but where I scratched will be white for about 10 minutes. No doc has been able to explain it. Never seems to happen when I am there and pictures never turn out well.
  3. I was having dizziness spells for a while. Even loud noise would trigger my head to spin. My pulmonologist recommended trying half a tablet of dramatize. It worked. I also drink the vitamin water with potassium with it to help as well. My dizzies have been mostly gone for over a year. I still get the occasional lightheadedness but the constant dizzies are gone for me for now.
  4. Curious, have you ever had your thyroid or cortisol checked? Other things besides autonomic dysfunction can cause what you describe. Starting heart rate doesn't matter that much. It is the jump that matters. For example if you start at 50 and stand up and it stays 80 you could have POTS.
  5. I was sent to my neurologist who specializes. My first appt he cut me off, didn't look at me. Seen me for 15 minutes after waiting an hour after my appt time. Then halfway through proceeded to yell at a nurse in front of me about a file not being in the right place on the computer. When I asked he said the file had nothing to do with me. I almost didn't go back for the follow up after he requested a blood test and urine catacholomine test. I am glad I did. He did another TTT, more blood testing, EEG, Brain MRI, Sinus CT, and nerve conduction study to help me find my underlying cause (haven't found it yet but ruling things out helps.) According to his nurses when you first come in he only sees you as data, as time goes by he gets to know you. He is a devout Muslim and pray for all of his patients. He has been great after that first time. I have seen him joke around and smile. Sometimes an unlikely doctor can be good. That being said he started with me double checking work. I had already had my POTS diagnosis. He reconfirmed it and added autonomic dysfunction as well. He is the one who started my midodrine which has been helpful. My cardiologist who diagnosed me knew nothing about POTS. I brought him data and requested the TTT. He was an amazing cardiologist but really didn't know enough to help beyond basic research. He sent me to the neurologist who after a time made me feel like I was not crazy. And things will be OK.
  6. I think everyone feels that way at one point. I know I did. I was recently informed I have OCD and that may be part of it (unofficially diagnosed) but I have to know. It is something that was brought to my attention that I don't know so I have to learn. Some people don't care. They just take their meds and feel well enough to live their life. They don't have to know why. I think it is all what makes them feel better mentally. I think soothing the mind helps cope with any condition.
  7. I just wanted to chime in. My underlying is still a mystery. I suspect an autoimmune because it runs rampant through my mom's side. RA, Lupus, Sjogren's, hashi's, and my grandmother had a bone marrow thing I can't remember for the life of me right now. It wasn't actually autoimmune but it was close. Unfortunately my ANA keeps coming up negative. I have had 3 ANA tests in the last 3 years. Always negative. It sounds like you found a good rheumatologist. Good doctors are so hard to find. Good luck!!
  8. My symptoms point to GERD but I refused the diagnosis til they proved it by doing the scope. Turns out I didn't have it and I was taking unnecessary medicine. I think it has to do with the autonomic dysfunction side of things that just makes it go haywire. So I just try to treat the symptoms and avoid triggers. After a while mine settled into a routine. Today my stomach is rumbling (I haven't eaten) but I feel full. I am just letting it be and as long as I am not nauseous too bad it will get over it. I will eat a little supper (acidic helps nausea for some reason) and tomorrow it will feel better. Sometimes the weirdest things help so don't give up.
  9. Let me know. Those are issues that are not bothersome to me now but would be interesting if they cycle back around. Good luck.
  10. My mom takes that for her osteoarthritis (she also has RA) as far as i know it is a medication that helps with nerve pain. Do you know why he thinks it may help. Just curious. The only insight i have is my mom doesn’t like it much. She is supposed to take it teice a day and only takes it once before bed.
  11. I was diagnosed at 30 after i went for a short run and was never able to breathe right. My symptoms are minor compared to some. I take midodrine and metoprolol to manage which has been working along with avoiding triggers and lots of rest. I think i have had it since i was a teenager and my 15 yo son is showing symptoms. I have not found an underlying cause yet so not sure what caused it. I hope you find some combination to help you. I think it depends on the person. Good Luck!
  12. I had a lot of issues you describe. I got an upper gi scope and everything was normal. I take rolaids with gas relief as needed (bad reaction to prilosec and zantac) i noticed if i cut out carby/bready stuff for a while i feel better. My mother in law is pushing for me to do Keto and i may just because i felt better without bready stuff. I use liquid probiotics (kefir) to also help my stomach issues. This stuff helps make it manageable. I hope you find the right balance assuming nothing else is going on. Good luck!
  13. I just wanted to chime in really quick. My blood pressure doesn’t really go haywire but my heart rate does. I bought a Garmin HR (better than a fitbit because it is water proof) last year and it helps me manage. If i start to feel bad i look at my heart rate on my Garmin if it is less than 125 i am ok, but when it goes over that i go lay down for a bit. I can also adjust my shower temperature accordingly by going by my Garmin. I found it gives me piece of mind. Personally I don’t mind being alone but i also don’t do alot physically either. If i do anything i do it slowly. It helps that my teenage kids are homeschooled and they can help too. Good luck and try to stay sane 😉
  14. I have not heard of the 6 months criteria before maybe someone else will have a better answer to that. I would assume because you could get the orthostatic issues from being on bed rest and may get better over the following months. You may have been like me. I suspect I have had my POTS since I was a teenager and it didn't flare until 3 years ago when it hit me like a truck. Mine started after a short run (less than a block, recreational). But I remember in high school they were teaching how to check your pulse and mine was high 90s sitting in class. I think it just happens for some people that way.
  15. I would definitely try to find a good neurologist. If your HR looks good there are other things. I would maybe get your eyes checked out too. My sister in law got her MS diagnosis started from seeing an ophthalmologist. Sometimes you can stumble on your diagnosis from someone unexpected.
  16. The last time i had the same issues you described. I stumbled to the nearest table and fell asleep for 20 minutes. I felt good in the water. Did too much and went to get out. It was before my new meds though. So hopefully it will be better this year.
  17. Yes to your breathing symptoms. Mine started almost 3 years ago. That is my main POTS symptom. It is everyday all day. If i fight it then i hyperventlate and end up in the ER. I had all the pulmonary testing, chest CT, clot tests, you name it. Inhalers made it worse ( turns out it was upping my HR which is why i felt worse). Still no answer on it except it is part of my autonomic dysfunction. My symptoms have eased since it started but it is still there. My O2 stats are always 98-100 so i try not to worry about. Trying different positions can sometimes help get that deep breath.
  18. My 2 nd cardiologist tried to send me to an EP cardiologist who said no she needs to see a specialist. He recommended the only one in my state. A neurologist 3 hours away. Turned out to be the greatest thing.
  19. I agree on the nightmare. I have been dealing with symptoms for 3 years. Diagnosed a year and a half ago. Only reason i have my diagnosis is because i found it and requested my testing. My main symptom is shortness of breath and unable to get a full deep satifying breath. My doctors were stumped. I believe i have had POTS since i was a teenager but no way to prove it. HR is key. Swept my back patio a few weeks ago and felt like i was dying. HR hit 172. I mostly do ok now i know what i have and my Garmin HR has been a life savior. The biggest thing is the change in HR. If your normal resting numbers are 50 when lying down and 90 when standing you can have POTS. My normal resting is 80s so i start high.
  20. Propanlol effected my breathing worse than it is so my pulmonogist reccomended metopelol ( sorry medication spelling sucks ) My cardiologist agreed and i have been taking it for about a year. I take 25 mg twice a day but upping it is in my near future. I have too many breakthroughs right now. My midodrine is more effective at this point. My POTS specialist wanted me back on the propanlol last fall but i told him no way.
  21. I just wanted to add my 2 cents. I was told by my first cardiologist that it was my anxiety and smoking causing my symptoms. Refused to put me on a tilt table. I walked into his office with my HR 106 sitting. I did a poor man’s tilt table everyday for a month. Brought it to my PCP who said that was weird. So she sent me to another cardiologist who agreed my results were unusual. He had no experience with POTS. He put me on the tilt table and it came back positive. We eventually found a specialist in my state who redid all my testing plus some and diagnosed me with POTS and Autonomic Dysfunction. If you know something is wrong keep trying. We have to be our own advocates. Currently I don’t have an underlying cause but i hope to find it. My 15 year old son is showing signs and symptoms and the doctors so far are doing nothing. I may end up having to make him an appointment with my specialist. Good luck to you and i hope you find your answers, whatever they may be.
  22. I have most of your symptoms, I was diagnosed with POTS last year. The heart rate jump is what is needed for the diagnosis though. I brought my suspicions to a cardiologist who diagnosed me. After 9 months he sent me to a "local" (3 hours away) neurologist who specialized in POTS and autonomic dysfuntion. I have been suffering for over 2 years with my crazy symptoms. It was nice to have the validation. Unfortunately my specialist has yet to find my underlying cause. Good luck. I know finding a doctor is hard and the hoops they make for you just makes it all the more frustrating.
  23. I wouldn't recommend starting to smoke, but when i feel crappy when i smoke i feel better. I loved how the first cardiologist try to say my breathing issues were from my smoking and anxiety. I tried to explain my smoking helps and he wrote me off as a nut. Nicotine seems to be hit or miss for people though.
  24. My breathing issue started over 2 years ago and was the start of my POTS journey. It feels like having a corset on and it is too tight. I feel like i have to take a deep breath every 2 or 3 minutes. Half the time i can't get my lungs to fully expand. Sometimes it feels like something is on my chest. Sometimes it feels like i am really pregnant and the baby is pushing on my lungs. And it varies in intensity everyday. Heart rate does not effect it but position can help get my satisfying breath easier. In the beginning i would fight it and end up in the ER from hyperventilating. Pulmonologist ruled out everything. Then i stumbled across POTS. I was diagnosed last January. I started seeing a POTS specialist in September. He believes it is because of my POTS not sending the signals right. We are investigating underlying causes now. Sometimes it can be frustrating not having the answer. But having doctors that believe me and slowly working toward an answer helps.
  25. I try to keep my water as cool as i can. I make sure i wear my garmin so i can watch my heart rate if i feel cruddy. And try to have my hubby shower with me whenever i can.
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